Standing Strong Together: Marking World Duchenne Awareness Day
WDAD 2025
Every year on September 7th, the world comes together to mark World Duchenne Awareness Day (WDAD) a global movement to raise awareness, foster inclusion, and advocate for better care, research, and support for those affected by Duchenne Muscular Dystrophy (DMD).
Duchenne is a rare, progressive genetic disorder that primarily affects boys and weakens the muscles over time, including those essential for breathing and the heart. Globally, DMD affects approximately 1 in every 3,500 live male births, and it has no known cure.
While the day is marked globally, here at Sapphire Africa Foundation, it is deeply personal.
In Uganda and much of Sub-Saharan Africa, Duchenne Muscular Dystrophy often goes undiagnosed or misunderstood. Many children are mislabelled as “lazy,” “weak,” or even “cursed” or families bewitched a reflection of the stigma and limited awareness surrounding rare diseases in our communities.
At Sapphire Africa Foundation, we’ve made it our mission to change that narrative.
Since launching our DMD program in 2018, we have identified and supported over more than 300 children living with Duchenne across East Africa, and extended our reach to Cameroon, and Nigeria. Each child represents a life that has been seen, understood, and supported.
One of those children was Caleb, a 17-year-old boy from Fort Portal, who sadly passed away earlier this year after battling a severe respiratory infection. Caleb was full of life, loved music, and dreamed of becoming a radio presenter. Through our program, he accessed regular therapy, nutritional support, and a wheelchair that allowed him to go back to school. His story, though heart-wrenching, reminds us of why awareness and support are so urgently needed.
Then there is Paul Kayunga, a single father from Wakiso, whose 15-year-old son, Emmanuel, is living with Duchenne. With training, therapy, and emotional support from Sapphire Africa Foundation, Paul now leads a parent support group in his district bringing hope to others who once felt as isolated as she did.
What We’re Doing This Year
To mark WDAD 2025, we are organizing a series of events under the theme “Breaking Barriers, Building Hope”:
Community health outreaches in Nakaseke and wakiso Districts to raise awareness.
Workshops with health workers and schoolteachers to improve diagnosis and inclusion.
Therapy and mobility equipment distribution, including wheelchairs and sets of braces and splints in collaboration with Only project.
Launch of a short documentary spotlighting family living with DMD in Uganda and Kenya.
We aim to reach over 5,000 people directly this year through these efforts.
In Africa, families affected by Duchenne often bear the burden alone. With limited access to specialists, mobility tools, and therapy, many children are left to deteriorate without care. Your support enables us to bring medical aid, emotional support, and dignity to these families.
Every donation, every shared story, every piece of advocacy means so much to us.
This World Duchenne Awareness Day, we invite you our donors, partners, and friends to walk this journey with us. Help us break the silence around Duchenne in Africa and give children a chance to dream, move, and thrive.
Email us to learn how you can support: info@tivanconsults.com
Together with you
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